Every Note Played(14)
“How do you take it?”
“Black.”
“Okay, you need to switch now to cream. Thicken all of your liquids. Make them slower. Thin liquids can lead to aspiration. How’s your weight?” She looks through the pages of his various charts.
“I’ve lost a few pounds.”
Eating has become a joyless, necessary chore. Anything that requires a knife and fork is out. Gone are medium-rare filets mignons at Grill 23. Opening jars and the packaging to his favorite cheese and the twist tie on a new loaf of bread requires a collaboration between his left hand and his knees and his teeth and a patient persistence he often doesn’t possess. Unable to lift his hand to even shoulder height at the end of the day, he has to lower his mouth to meet his fork or spoon. It’s painstaking and sloppy, and he looks ridiculous, and because he can’t get over worrying about what he looks like, he refuses to eat in public. Dining used to be a social and savored experience. Now he mostly orders takeout and eats alone.
And he’s started choking. The muscles that coordinate the safe movement of food from the back of his mouth down the esophagus to his stomach must be weakening because sometimes food gets lodged halfway down the tube or, worse, sucked down the wrong pipe. And as they just witnessed, he now has the coughing capacity of a kitty cat, so a small bite of cracker has been a life-threatening endeavor more than once. Almost killed by a cracker. He doesn’t share this with Kathy.
“Okay, yup, you’ve lost seven pounds in three months. We need to stabilize your weight. You need to eat more. High-fat, high-density foods and liquids.”
“Okay.”
“Cream in your coffee, butter on your bread, pies à la mode.”
“Everything my cardiologist recommends.”
“We’re not going to worry about heart disease.”
Right. A heart attack would be a blessing.
“Can you lift your right leg for me and don’t let me push it down?”
He resists her for many sustained seconds through increasing pressure before he finally fails. They do the same exercise on the left until he fails.
“Good. You experiencing any foot drop, any falls?”
“No.”
He’s lying, and his heart beats faster as he waits to see if she catches him. He clipped his right toe on a step going up his front stoop last week, and he fell hard, bashing the right side of his chin and trampling his paralyzed forearm underneath his body. He’s wearing a long-sleeve shirt, hiding the massive bruises covering his right arm, and his beard is apparently thick and dark enough to mask the scabbed gash on his chin.
She taps his knees, checking his reflexes. She performs various strength tests on his feet. He gets a passing grade.
“Any cramping?”
“No.”
“Your legs are looking good for now. But your arm is going, so you won’t be using a cane or a walker once your legs weaken. The power wheelchairs take three to six months to get, so we’ll have PT put in an order for you now.”
Again, he stares at her with a flat gaze. She can go ahead and order the chair, but he won’t endorse this decision with a blink or a nod.
“I’m worried about your dysphagia and the weight loss. Have you thought at all about whether you want to get a feeding tube?”
Only in that he doesn’t want to think about it. “No.”
“Okay, Dr. Prince will talk you through what’s involved and schedule you for the procedure if you decide to go ahead.”
He was scheduled to play in Chicago, Baltimore, Oslo, Copenhagen. He’s supposed to schedule piano concerts, not feeding-tube surgery. His head swims.
“Your breathing still seems strong. Dr. Kim’s going to see you next to check you out more thoroughly there.”
Dr. Kim is the pulmonologist.
“Have you banked your voice yet?”
“No.”
“Is this something you want to do?”
“I’m not sure.”
“It might be a good idea to look into that now. When the time comes, you can always use the synthetic, computer-generated voice, but it’s really nice to have the option of still using your own. The guy who does the banking is at Children’s Hospital. I’ll make sure you have his contact information before you leave today. If you want to do it, I wouldn’t put it off much longer.”
Kathy flips through his charts, pencils in some additional notes that Richard can’t decipher, then looks up at him and smiles, satisfied.
“That’s all for me. Do you have any questions? Anything you need that I can help you with?”
Let’s see. What does he need? He needs to bank his voice because he’ll soon be unable to speak, and the alternatives are to sound like Stephen Hawking or be totally mute. He might need a feeding tube. He’s going to need a wheelchair ASAP. He needs a new apartment with an elevator and ramps. He needs someone to look after him.
It’s too much to take in. Too many losses and needs at once. He tries to focus on what is most immediate. The loss of his left hand. He’ll have no hands. He’ll no longer be able to feed himself, dress himself, wash himself. He’ll empty his bank accounts and hire help. He won’t be able to type on the computer. He’ll use his big toes.
He’s going to lose Ravel’s Piano Concerto for the Left Hand. He’ll never play the piano again.